Warning on CFS/SEID ME/CFS/SEID Research & Advocacy
A warning on 'CFS,' 'SEID' and 'ME/CFS' research and advocacy
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘SEID’ or ‘ME/CFS’ or ‘CFS/ME/SEID’ does not involve M.E. patients and is not relevant in any way to M.E. patients. Those with M.E. are not in a position to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients
A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. This paper includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
The various fatigue definitions of ‘CFS’ do not define M.E. Myalgic Encephalomyelitis is an organic neurological disorder; the definitions of ‘CFS’ do not reflect this.
Ever since an outbreak of M.E. in the US was given the label ‘CFS,’ the name/definition ‘CFS’ has prevailed for political reasons. ‘CFS’ is widely though wrongly applied to M.E. as well as to many other diseases. The question for M.E. patients is whether any of the research on ‘CFS’ may be relevant to them/their disease
The overwhelming majority of research on ‘CFS’ or ‘SEID’ or ‘ME/CFS’ or ‘CFS/ME’ or does not involve M.E. patients and is not relevant in any way to M.E. patients. These terms and concepts are often used to describe all those patients with Lyme disease, various post-viral fatigue syndromes, burnout, adrenal exhaustion, depression and so on. These terms and concepts are meaningless and are used to refer to very different, and often very mixed, patient groups.
Research which may involve M.E.
Whether influenced by political considerations surrounding the name/definition ‘CFS’ or not, however, some researchers have produced a very small amount of research under the name ‘CFS’ which involves at least some M.E. patients, as this research details those abnormalities which are unique to M.E.
It is important to be aware of the research findings that do hold some value for M.E. patients, although it may be difficult to distinguish these from valueless ‘CFS’ research. A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E.
The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology.
Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘SEID’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in: Putting research and articles into context.
The issues discussed here apply not only to research, but also to politics, advocacy and discussion; a very small amount of what is done in the name of ‘CFS’ or ‘SEID’ or ‘ME/CFS’ may be relevant to M.E. Most of it is not relevant to M.E. and may severely harm the interests of M.E. patients (and other patients misdiagnosed with ‘CFS’).
Assessing ‘CFS’ research: a checklist
List of characteristics associated with M.E. (suggesting that the research is, to some extent, studying M.E.):
*Acute onset (associated with a virus; an enterovirus)
*The disease occurs in outbreaks as well as sporadically (the incubation period of the virus is 4-7 days)
*Damage to the central nervous system (which is observable on brain scans, and which is similar to MS)
*Consequences of neurological damage such as loss of homeostasis in many of the body’s systems
*Abnormalities seen on many different objective tests (including ESR tests, NK cells tests, Holter monitors and physical exam) within weeks of disease onset
*Seizures and paralysis
*Cognitive dysfunction, involving concentration, memory and perceptual problems
*Sensory disturbance and over-sensitivity
*Reduced circulating blood volume and associated problems such as orthostatic intolerance, neurally mediated hypotension and POTS
*Cardiac abnormalities such as tachycardia and reduced cardiac function
*Mitochondrial dysfunction, resulting in loss of energy production, and impaired immunity and cellular repair capability
*Delayed effect following physical, mental or sensory overexertion (24 to 72 hours or more)
*Worsening of illness, serious relapse or possibly death following overexertion
*Severe disability lasting many years (most often lifelong) which may also result in death
M.E. research that tallies closely with historical M.E. research and data from the world’s most experienced M.E. experts such as Dr Ramsay, Dr Richardson, Dr Dowsett and Dr Hyde.
Research/advocacy articles by Dr Ramsay, Dr Richardson, Dr Dowsett and Dr Hyde are highly recommended. Medical information by Dr Cheney is most likely of interest, although Dr Cheney cannot be described as a M.E. expert as he unfortunately mixes the facts about M.E. and ‘CFS’ in his work. (See: Is Cheney talking about M.E. or 'CFS'? and also MERGE/MERUK, ‘ME/CFS’ and ‘CFS.’)
List of characteristics associated with ‘CFS’ (indicating that the research is looking at mixed ‘CFS’ patient groups and is useless for M.E. patients):
*Onset following overwork or stress
*Onset following EBV infection (or other common viruses including flu, Ross River virus, hepatitis infections and so on)
*Fatigue or exhaustion (as the defining or most severe symptom of the illness) or symptoms referred to as vague and ‘everyday’ type symptoms
*Omission of the serious neurological and cardiac (and other) dysfunctions which define M.E.
*Emotional state, personality type or psychological history associated with causing or prolonging illness
*Short duration of illness and/or naturally resolving illness after a short period of time or illness which resolves or improves with exercise therapy, psychotherapy or antidepressant drugs (or similar)
*Mild illness which cannot result in death
Research which discusses subtypes, subsets or subcategories of ‘CFS’ or ’CFS/ME’ or ‘ME/CFS’ or “SEID” etc. is not relevant to M.E. These so-called subgroups merely define different groups of patients misdiagnosed with ‘CFS’ or ‘ME/CFS.’ These are not M.E. patients; they are patients who urgently need to be given their correct diagnosis.
Articles which support concepts such as renaming ‘CFS’ as ‘ME/CFS’ (or similar) are also unhelpful, not relevant to M.E. and should not be considered a genuine contribution to M.E. activism. This strategy benefits only the same vested interest groups which benefitted from the creation of ‘CFS’ or “SEID”
Unfortunately, while many advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in most cases. Very nearly all of these groups which started out determined to fight against the bogus ‘CFS’ propaganda and the abuse of science and ethics, are now actively SUPPORTING it. They have sold patients out to the highest bidder. Thus information provided by almost all so-called advocacy groups in this field should not be trusted or assumed in any way to be useful or accurate or in the best interests of patients.
Problems with this heterogeneous and skewed research
A very small number of ‘CFS’ studies refer in part to people with M.E. but it is not always clear which parts refer to M.E. Unless studies are based on an exclusively M.E. patient group, results cannot be interpreted and are meaningless for M.E. Virtually all of the ‘CFS’ or ‘SEID’ or ‘ME/CFS’ research which does relate to M.E. (at least in part) is also significantly contaminated by ‘CFS’ propaganda.
Note that if the various ‘CFS’ criteria are strictly followed, those patients with the neurological disease M.E. (who will always exhibit unambiguous signs of organic disease) will be excluded from study as ‘CFS’ describes a syndrome which is always ‘medically unexplained.’
Often the research that offers a glimmer of genuine hope to Myalgic Encephalomyelitis patients is research into diseases that share significant similarities with M.E. including Alzheimer’s, Polio, Parkinson’s, AIDS, Lupus, Multiple Sclerosis and so on. (Alzheimer’s, Parkinson’s and Multiple Sclerosis are listed along with M.E. under ‘Diseases of the nervous system’ in the ICD Classifications.) These studies have far more relevance to M.E. patients than almost all of the ‘CFS’ studies produced which lack scientific merit and use exclusively or almost exclusively non-M.E. patient groups.
Why not reject all ‘CFS’ research?
It may be tempting for people who understand this situation to reject/ignore all work on/discussion of ‘CFS’ altogether, as not being relevant to M.E. However, a blanket rejection of all parts of all ‘CFS’ research could be just as dangerous as a blanket acceptance of all bogus ‘CFS’ research. Some ‘CFS’ labelled research does undoubtedly involve M.E. patients and does describe those abnormalities/characteristics unique to M.E. patients, and so may be of use to M.E. patients in search of practical help.
If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), this would seem to support the myth that ‘CFS’ is just a somewhat ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics. This is the number one myth that causes so much confusion and leads to so much abuse and needless extra suffering and deaths. The M.E. community cannot afford to give any support to this myth, lest we further entrench our own abuse (and the abuse and neglect of all those misdiagnosed with ‘CFS’ who do not have M.E.).
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus disease category of ‘CFS’ must be abandoned for the benefit of M.E. patients and all other patient groups involved. The likelihood of “CFS” being abandoned is next to nil however, the M.E. community must work uncompromisingly towards the goal that the ICC should be used to diagnose patients with with Mild to Very Severe Myalgic Encephalomyelitis.
Note that virtually all of the research which does relate to M.E. (at least in part) but which uses the term ‘CFS’ (or ‘ME/CFS,’ or’ SEID’ etc.) is also contaminated in some way by ‘CFS’ misinformation. Most often these papers contain a bizarre mix of facts relating to both M.E. and ‘CFS’ and imply that M.E. and ‘CFS’ represented one and the same patient group.
Not all those involved with ‘CFS’ have vested financial and political interests, yet often these non-vested-interest groups still also produce significantly flawed, psychiatrically biased and ‘fatigue’ based information. Unfortunately these other groups have been unduly swayed and manipulated to varying extents by the enormous amount of superficially legitimate information widely disseminated by such powerful vested groups and individuals. Some researchers have seemingly been taken in entirely by such scientifically unsupportable theories, as have the large majority of the world’s journalists and politicians (albeit with some notable exceptions). Even some of the best research on the illness is shrouded in heavy usage of misleading and propagandising language and false statements which often bizarrely contradict the harsh realities uncovered in the studies themselves, unfortunately.
Although the terminology is often used interchangeably, incorrectly and confusingly, the DEFINITIONS of M.E. and ‘CFS’ are very different and distinct. It is the definitions of each of these terms which are of primary importance. The distinction must be made between terminology and definitions.
Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
The only thing that makes any sense is for patients with Myalgic Encephalomyelitis, to be studied ONLY under the name Myalgic Encephalomyelitis – and for this term ONLY to be used to refer to a 100% M.E. patient group. The only correct name for this illness – Myalgic Encephalomyelitis as per the ICC 2011, Ramsay, Hyde.
M.E. is not interchangeable with CFS, nor is it a subgroup of CFS.
Copyright © Jodi Bassett 2009. Written by Jodi Bassett and co-written by Lesley Ben, April 2009. This version updated May 2009. http://www.hfme.org/warningoncfsresearch.htm?fbclid=IwAR0GolGKTXQSXC3TGDoz3YWtqS8HT7htewUKfnOAKSqz1KBMV9TSzomoq6k
The vested interests of the Insurance companies and their advisers must be totally removed from all aspects of benefit assessments. There must be a proper recognition that these subverted processes have worked greatly to the disadvantage of people suffering from a major organic illness that requires essential support of which the easiest to provide is financial. The poverty and isolation to which many people have been reduced by ME is a scandal and obscenity. Professor Malcolm Hooper 2006 https://books.google.ca/books?id=vRxcAwAAQBAJ&pg=PA18&lpg=PA18&dq=poverty+and+isolation+to+which+many+people+have+been+reduced+by+ME+is+a+scandal+and+obscenity.+Professor+Malcolm+Hooper+2006&source=bl&ots=FYAN2Y68iu&sig=ACfU3U0Aa4xAbLvisf0q2BEglGz8jmbJSA&hl=en&sa=X&ved=2ahUKEwjjyazosMbiAhVGQ6wKHVQSACQQ6AEwAHoECAkQAQ#v=onepage&q=poverty%20and%20isolation%20to%20which%20many%20people%20have%20been%20reduced%20by%20ME%20is%20a%20scandal%20and%20obscenity.%20Professor%20Malcolm%20Hooper%202006&f=false
M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis. It has an UNIQUE Neuro-hormonal profile. .Dr Elizabeth Dowsett: https://documents.pub/document/page-43.html
M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis. Dr Byron Hyde 2006 http://www.investinme.org/Documents/PDFdocuments/Byron%20Hyde%20Definition%20Booklet.pdf
“People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.’ Professor Hooper 2003
‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance’ Dr Byron Hyde 2006